ICU-recovery in Scandinavia: A comparative study of intensive care follow-up in Denmark, Norway and Sweden, Professor of clinical nursing University of Copenhagen and Rigshospitalet
Context and content of The Scandinavian context before 2010 The emergence of patient diaries and follow-up 1990-2000 ICU follow-up in Denmark, Norway and Sweden around 2008 The greater context after 2010 International trends: ICU survivorship, burdens of critical care (human and economic cost), postintensive care syndrome(-family) 2
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Inhabitants in millions Number of ICUs Inhabitants per ICU ICUs using diaries n (%) Denmark 5.4 48 112.500 19 (40%) Norway 4.8 70 68.571 31 (44%) Sweden 8.9 86 103.488 65 (76%) 4
Emergence of ICU diaries and follow-up (NOFI study) 5
Patient diaries in Scandinavia Emergence Open charting systems in Denmark 1980s Project: Patient emancipation Patient diaries in 1990s Organization: Bottom-up initiative; grassroots movement; inter-scandinavian collaboration Photo-diary in 1990s Project: Patient orientation 6
Patient diaries in Scandinavia Emergence 1980-1990s Based on nurses experiences Perceived pragmatic need (Hazzard et al. 2013) Vague purpose and unclear outcomes Protection vs confrontation Nurses lacked academic preparation Little research and lack of evidence-base Empirical evidence vs humanistic understanding Nurse autonomy in Scandinavia 7
Patient diaries in Scandinavia
Patient diaries in Scandinavia
Patient diaries in Scandinavia Emergence and evolution Norway and Sweden: Systematic practice Guidelines for inclusion and practice Diary as adjunct to follow-up Denmark: Non-systematic practice Nurses with special interest (voluntary) Semi-selected patients receive diary Diary without follow-up Patient visits (voluntary) 10
Patient diaries in Scandinavia Evolving schools of thought Denmark: Diary as an expression of empathy - acknowledgment Acknowledgment of personhood Identification with emotions, feelings and reactions Norway: Diary as an act of caring understanding and meaning Patient as interpreter of meaning and ability to wonder Enabling sudden insight and meaning The meaning of being somewhere else Sweden: Diary as a therapeutic practice; orientation to reality Based on theory of coping and crisis Debriefing and realistic description Logical and chronological information 11
Nordic perspectives on ICU follow-up Diaries and follow-up were provided by nurses with a special interest rather than as part of the established treatment plan -Danish view: Humanistic -Norwegian view: Existential -Swedish view: Therapeutic 12
Nordic perspectives on ICU follow-up reconstructing the story filling in the gaps Reconstruction of personhood requires both feeling like a complete individual (i.e. reconstructed self-identity) and being accepted as one by other people (i.e. reconstructed place in the world), (Levack et al. 2010). Narratives not only re-enact experience in the telling, but reinforce social and cultural structures of society through their telling. Creating a sense of personhood and shared humanity. Life threads represent the stories or strands of ourselves that we create and re-create though life. In order to appreciate the importance of narratives it is necessary to explore their structure. A narrative is a re-creation of events, not a mere list of episodes. (Ellis-Hill et al. 2008) 13
ICU-recovery in Scandinavia: A comparative study of intensive care follow-up in Denmark, Norway and Sweden (NOFI study) 14
Four models of follow-up With diary Nurse-led Model I. Without diary Model II. Interdisciplinary Denmark, Norway, Sweden Model III. Sweden Denmark Model IV. Denmark
ICU follow-up goals and methods Focus on past Focus on present Focus on future Goal Promote psychological or existential recovery Patient assessment Research Treatment Promote physical and social recovery Method Patient narration Diary review ICU visit ICU-Memory Tool HADS PTS-14 SF-36 Rehabilitation program
Basic models of follow-up Model 1 Nurse-led follow-up with patient diary (Denmark, Norway, Sweden) Variations Follow-up at ward during diary handover Follow-up at ICU after hospital discharge Follow-up at hospital 2-3 months post hospital discharge Follow-up at hospital > 3 months post hospital discharge + optional phone call after 6-12 months Follow-up targeted long-term patients only ( > one week in ICU) Model 2 Nurse-led follow-up without patient diary (Denmark) Follow-up at hospital 2-3 months post hospital discharge Model 3 Multidisciplinary follow-up with patient diary (Sweden) Variations Follow-up at hospital after discharge based on diary and hospital chart Follow-up at hospital after discharge based on validated instruments Model 4 Multidisciplinary follow-up without patient diary (Denmark) Follow-up at hospital 2-3 months post hospital discharge
Basic activities in Nordic follow-up programs before 2010 Stage of trajectory Time of intervention Common elements in follow-up During ICU stay In ICU Patient diary written by nurses and in some cases family Rehabilitative interventions: Minimal sedation, early mobilization, delirium prevention, reorientation, patient and family collaboration After ICU transfer At transfer Transfer from ICU to ward, step-down, or other ICU 3-5 days post transfer ICU-nurse visits patient on ward, followup initiated, consent for contact after discharge, assessment using ICU- Memory Tool After hospital discharge At discharge Discharge from hospital to home or rehabilitation facility 1 month post discharge Information material sent to patient 1-2 months post discharge Invitation to follow-up visit 2-3 months post discharge Follow-up visit (nurse-led or interdisciplinary), diary review, revisit ICU, patient tells story, family collaboration, patient assessment for anxiety and depression (HADS), posttraumatic stress (PTSS-14), selfassessed health (SF-36) 3, 6, 12 months post discharge Additional follow-up, telephone contact, repeat SF-36
Guidelines for follow-up 2009 19
NHS Guidelines for follow-up
Trends in critical care after 2000 Lighter sedation Analgo-sedation Sedation interruption More awake patients Delirium detection Role of family 21
Trends in critical care after 2010 ICU survivorship Post-intensive care syndrome Post-intensive care syndrome family Burdens of intensive care 22
Survivorship an emerging major issue (Needham et al. 2011) ICU survivorship +Aging population +Reduced ICU-mortality =Growing number of ICU survivors 23
ICU Survivorship High prevalence of short- and long-term sequelae impair survivors quality of life: Physical Cognitive Mental health 24
Post-Intensive Care Syndrome (PICS) (Davidson et al. 2013) 25
Burdens of survivorship (Iwashyna & Netzer 2012) Distinguishing Impairment, Limitations, Restrictions, and Quality of Life Baseline (pre ICU) Acute illness (ICU) Tissue and pathology impairment Activity limitations Participation restrictions & disability Quality of Life 26
Burdens of survivorship (Iwashyna & Netzer 2012) Social environment and psychological makeup Baseline status Acute illness Psychological effects Self-efficacy, depression Role definitions Adaptation Expectations Resilience 27
Tentative recommendations for improving long-term outcomes (Iwashyna & Netzer 2012) Provide high-quality acute intensive care Involve rehabilitation experts as early as possible Consider structured assessment of limitations Mobilize the patient s social resources Arrange close follow-up Learn from PRaCTICal (Cuthbertson et al. 2009) Get feedback from patients on long-term outcomes 28
Review of ICU Follow-Up Clinics (Nebraska, USA) 29
Long-term outcomes Quality of life Lung function Psychological outcomes and cognition Nutrition Polypharmacy Complications in family members Healthcare utilization and costs post ICUdischarge 30
ICU Follow-up clinic The ICU follow-up clinic model Physical and psychiatric evaluation Cognition-based interventions Airway and pulmonary evaluation Medication reconciliation form Palliative care and social worker assessment Limitations in delivery of post-icu care 31
ICU Follow-up clinic The ICU follow-up clinic model There is no one accepted model for the delivery of ICU follow-up clinics. Led by a nurse or doctor, or a combination of both. - E.g. 4 hours/week for patients who received 48 hours of mechanical ventilation - QOL, Montreal Cognitive Assessment tool, pulmonary function, 6-minute walk test, medication reconciliation, weight assessment. 32
ICU Follow-up clinic The ICU follow-up clinic The Challenge: Lack of supporting evidence showing its effectiveness 33
Critical Care Recovery Center (Indianapolis, USA)
Critical Care Recovery Center (CCRC) http://www.wishard.edu/our-services/ccrc CCRC is a new program that will assist with your recovery after being in an intensive care unit. You may have problems physically, emotionally and/or cognitively (thinking/memory). The CCRC can assist you and your family with all of your recovery needs in one place. Patients must be 18 years or older, and typical treatment with CCRC lasts six to twelve months. The program is designed to supplement, not replace, treatment from patients primary care physician. The CCRC team consists of a pulmonary/critical care specialist, nurse practitioner, social worker and medical assistant to ensure that all patients needs are met. 35
Long-Term Cognitive Impairment after Critical Illness (Vanderbilt, USA) Survivors of critical illness often have a prolonged and disabling form of cognitive impairment that remains inadequately characterized. Patients in medical and surgical ICUs are at high risk for longterm cognitive impairment. A longer duration of delirium in the hospital was associated with worse global cognition and executive function scores at 3 and 12 months. (Pandharipande 2013 BRAIN-ICU Study) 36
What next? International collaborative studies and trials (Christina Jones) Workshops (Carl Bäckman) Interdisciplinary practice Patient and family involvement Drop-in programs (Peter Gibb) International website (Peter Nydahl) New ideas? 37
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